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1.
JNCI Cancer Spectr ; 8(3)2024 Apr 30.
Artículo en Inglés | MEDLINE | ID: mdl-38676662

RESUMEN

BACKGROUND: Long-term survivors of childhood cancer face elevated risk for financial hardship. We evaluate whether childhood cancer survivors live in areas of greater deprivation and the association with self-reported financial hardships. METHODS: We performed a cross-sectional analysis of data from the Childhood Cancer Survivor Study between 1970 and 1999 and self-reported financial information from 2017 to 2019. We measured neighborhood deprivation with the Area Deprivation Index (ADI) based on current zip code. Financial hardship was measured with validated surveys that captured behavioral, material and financial sacrifice, and psychological hardship. Bivariate analyses described neighborhood differences between survivors and siblings. Generalized linear models estimated effect sizes between ADI and financial hardship adjusting for clinical factors and personal socioeconomic status. RESULTS: Analysis was restricted to 3475 long-term childhood cancer survivors and 923 sibling controls. Median ages at time of evaluation was 39 years (interquartile range [IQR] = 33-46 years and 47 years (IQR = 39-59 years), respectively. Survivors resided in areas with greater deprivation (ADI ≥ 50: 38.7% survivors vs 31.8% siblings; P < .001). One quintile increases in deprivation were associated with small increases in behavioral (second quintile, P = .017) and psychological financial hardship (second quintile, P = .009; third quintile, P = .014). Lower psychological financial hardship was associated with individual factors including greater household income (≥$60 000 income, P < .001) and being single (P = .048). CONCLUSIONS: Childhood cancer survivors were more likely to live in areas with socioeconomic deprivation. Neighborhood-level disadvantage and personal socioeconomic circumstances should be evaluated when trying to assist childhood cancer survivors with financial hardships.


Asunto(s)
Supervivientes de Cáncer , Estrés Financiero , Humanos , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Masculino , Femenino , Estudios Transversales , Adulto , Persona de Mediana Edad , Niño , Neoplasias/economía , Neoplasias/psicología , Características del Vecindario , Hermanos , Factores Socioeconómicos , Características de la Residencia , Clase Social , Adolescente , Pobreza , Autoinforme , Disparidades Socioeconómicas en Salud
2.
JACC CardioOncol ; 5(4): 489-500, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37614575

RESUMEN

Background: It is unknown whether a history of childhood cancer modifies the established disparities in cardiovascular risk factors (CVRFs) observed in the general population. Objectives: We sought to determine if disparities in CVRFs by race/ethnicity are similar among childhood cancer survivors compared with the general population. Methods: The Childhood Cancer Survivor Study (CCSS) is a retrospective cohort with a longitudinal follow-up of 24,084 5-year survivors diagnosed between 1970 and 1999. Multivariable piecewise exponential regression estimated incidence rate ratios (IRRs) for hypertension, hyperlipidemia, diabetes, obesity, and ≥2 CVRFs by race/ethnicity. The CCSS sibling cohort and the National Health and Nutrition Examination Survey cohort were used to compare the sociodemographic-adjusted IRRs for same-race/same-ethnicity disparities. Results: Non-Hispanic Black (NHB) (n = 1,092) and Hispanic (n = 1,405) survivors compared with non-Hispanic White (NHW) (n = 13,960) survivors reported a higher cumulative incidence of diabetes (8.4%, 9.7%, and 5.1%, respectively); obesity (47.2%, 48.9%, and 30.2%, respectively); multiple CVRFs (17.7%, 16.6%, and 12.3%, respectively); and, for NHB survivors, hypertension (19.5%, 13.6%, and 14.3%, respectively) by 40 years of age (P < 0.001). Controlling for sociodemographic and treatment factors compared with NHW survivors, IRRs for NHB were increased for hypertension (IRR: 1.4; 95% CI: 1.1-1.8), obesity (IRR: 1.7; 95% CI: 1.4-2.1), and multiple CVRFs (IRR: 1.6; 95% CI: 1.2-2.1). IRRs for Hispanic survivors were increased for diabetes (IRR: 1.8; 95% CI: 1.2-2.6) and obesity (IRR: 1.4; 95% CI: 1.2-1.7). The pattern of IRRs for CVRF differences was similar among CCSS sibling and National Health and Nutrition Examination Survey cohorts. Conclusions: The higher burden of CVRFs among NHB and Hispanic survivors compared with NHW survivors was similar to the general population. The promotion of cardiovascular health equity is critical in this high-risk population.

3.
Open Forum Infect Dis ; 9(11): ofac535, 2022 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-36381625

RESUMEN

Background: Sargramostim (yeast-derived, glycosylated recombinant human granulocyte-macrophage colony-stimulating factor [rhu GM-CSF]) augments innate and adaptive immune responses and accelerates hematopoietic recovery of chemotherapy-induced neutropenia. However, considerably less is known about its efficacy as adjunctive immunotherapy against invasive fungal diseases (IFDs). Methods: The clinical courses of 15 patients with pediatric malignancies and IFDs treated adjunctively with sargramostim at a single institution were analyzed in a retrospective cohort review. Further, a systematic review of published reports of rhu GM-CSF for IFDs was also conducted. Results: Among 65 cases, 15 were newly described pediatric patients and 50 were previously published cases of IFDs treated with rhu GM-CSF. Among the newly reported pediatric patients, IFDs were caused by Candida spp., Trichosporon sp., and molds (Aspergillus spp., Rhizopus sp., Lichtheimia sp., and Scedosporium sp). Twelve (80%) were neutropenic at baseline, and 12 (80%) were refractory to antifungal therapy. Among 12 evaluable patients, the overall response rate was 92% (8 [67%] complete responses, 3 [25%] partial responses, and 1 [8%] stable). Treatment is ongoing in the remaining 3 patients. Among 50 published cases (15 Candida spp., 13 Mucorales, 11 Aspergillus spp., 11 other organisms), 20 (40%) had baseline neutropenia and 36 (72%) were refractory to standard therapy before rhu GM-CSF administration. Consistent with responses in the newly reported patients, the overall response rate in the literature review was 82% (40 [80%] complete responses, 1 [2%] partial response, and 9 [18%] no response). Conclusions: Sargramostim may be a potential adjunctive immunomodulator for selected patients with hematological malignancies and refractory IFDs.

4.
Cureus ; 14(2): e21981, 2022 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-35282564

RESUMEN

Introduction Given their risk for late effects and early mortality, childhood/adolescent cancer survivors (CACSs) should receive longitudinal monitoring and care. The Southern California Pediatric and Adolescent Cancer Survivorship (SC-PACS) consortium was established in February 2017 to combine resources and expertise across seven participating survivorship programs. Its over-arching objective is to address the unique needs of its demographically diverse CACS population through collaborative survivorship research and care initiatives. The first SC-PACS study was an assessment of survivorship needs and evaluation of current services as reported by CACSs and their parents/primary care givers (PPCGs) receiving survivorship care at consortium sites. Methods As an initial investigation, a cross-sectional survey for CACSs and their parents/primary care givers was conducted. The goal was to enroll 10 CACSs and 10 PPCGs from each of the seven institutions (total of 140 participants). The eligibility criteria for CACSs were age ≥13 years at the time of enrollment, >2 years from the end of treatment, sufficient cognitive function to complete the survey, and English or Spanish language proficiency. For CACSs <13 years old, their PPCGs completed the survey. This was a convenience sample using frequencies and proportions to describe participant characteristics and survey responses, which were entered into a Research Electronic Data Capture (REDCap) database. Results Across the consortium, of the recruitment target of 140 participants (CACSs, n=70; PPCGs, n=70), 127 (90.7%) participants were enrolled. Of the 127 participants enrolled, 65 (51.2%) were CACSs and 62 (48.8%) were PPCGs. The majority of participants were female (51.2%), were Hispanic (62.2%), spoke English as the primary language at home (57.5%), and were diagnosed between one to four years of age (45.7%). Information considered most important by both CACSs and PPCGs was related to cancer diagnosis (90.8%) and future risks as a result of cancer treatment received (98.0%). Overall, 78% of CACSs and PPCGs found the survivorship information (treatment summary) useful, and 83% felt that they received the right amount of information about their cancer. Conclusion Our aim was to obtain baseline data that would characterize our CACS population, inform consortium priorities, and establish a collaborative research platform. The ultimate goal of the consortium is to develop a comprehensive survivorship care approach that addresses the most important needs of cancer survivors in our catchment area and promotes best practice interventions. Future plans are to expand the needs assessment survey to obtain a wider representation of the survivor population at SC-PACS institutions, helping create strategies to improve cancer-specific education, delivery of treatment summary, and access to community resources for this demographically and socioeconomically diverse population.

5.
Health Promot Pract ; 23(5): 861-873, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35199605

RESUMEN

BACKGROUND: Low receipt of survivorship care by Latino adolescent and young adult (AYA) cancer survivors necessitates development of age-appropriate and culturally tailored interventions aimed at increasing their perceived need for survivorship care. METHOD: This study describes the development and acceptability testing of a culturally tailored intervention, a photonovela, as part of a community-partnered participatory research (CPPR) project. A four-step approach to the photonovela's development was implemented: (a) literature review, (b) RAND-modified Delphi method, (c) photonovela booklet development, and (d) photonovela acceptability testing through focus groups. Using the CPPR approach, community and academic experts and members worked together at all stages of this project to identify educational domains for the photonovela and ensure that community views and scientific knowledge were equally represented. RESULTS: Cancer survivors and their families described the photonovela as entertaining and relatable. Its story positively reflected their own experiences, and they connected strongly with its characters. Acceptability testing of the photonovela played a significant role in its final script and content, and provided additional new insights into understanding survivorship care perspectives for Latino AYA survivors and their families. CONCLUSION: Equal and shared community and academic involvement through CPPR is essential in identifying unique needs and developing culturally acceptable educational interventions for Latino AYA cancer survivors. The photonovela was seen as an important educational resource in enhancing knowledge and increasing perceived need for survivorship care in this population.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Adolescente , Hispánicos o Latinos , Humanos , Neoplasias/terapia , Sobrevivientes , Supervivencia , Adulto Joven
6.
Pediatrics ; 148(3)2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-34462344

RESUMEN

Progress in therapy has made survival into adulthood a reality for most children, adolescents, and young adults with a cancer diagnosis today. Notably, this growing population remains vulnerable to a variety of long-term therapy-related sequelae. Systematic ongoing follow-up of these patients is, therefore, important to provide for early detection of and intervention for potentially serious late-onset complications. In addition, health counseling and promotion of healthy lifestyles are important aspects of long-term follow-up care to promote risk reduction for physical and emotional health problems that commonly present during adulthood. Both general and subspecialty health care providers are playing an increasingly important role in the ongoing care of childhood cancer survivors, beyond the routine preventive care, health supervision, and anticipatory guidance provided to all patients. This report is based on the guidelines that have been developed by the Children's Oncology Group to facilitate comprehensive long-term follow-up of childhood, adolescent, and young adult cancer survivors (www.survivorshipguidelines.org).


Asunto(s)
Supervivientes de Cáncer , Atención a la Salud , Adolescente , Adulto , Cuidados Posteriores , Niño , Estudios de Seguimiento , Humanos , Masculino , Neoplasias/terapia , Sobrevivientes , Adulto Joven
7.
Artículo en Inglés | MEDLINE | ID: mdl-37273895

RESUMEN

Background: Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care. Objective: This study describes the infrastructure of a community-partnered participatory research (CPPR) project between a community-based organization and a National Cancer Institute (NCI)-designated cancer center to develop culturally-tailored interventions to improve Latino AYA cancer survivor knowledge regarding their need for survivorship care. Methods: Research team participants included the community organization and NCI cancer center directors, a research coordinator, a community liaison, and cross-training program interns. Through use of Jones's theoretical framework, additional stakeholders from academic and community settings were identified and invited to participate in the research team. A process evaluation and qualitative interviews were conducted to assess equal partnership between community and academic stakeholders and determine if the infrastructure followed the five core principles of CPPR. A grounded theory approach was used to analyze qualitative data. Conclusions: CPPR between an NCI-designated cancer center and a community-based organization is a new research model for conducting minority AYA cancer survivor outreach. Open communication was critical in engaging the Latino community to discuss their survivorship needs. Community stakeholders were key to infrastructure success through fostering a cohesive partnership with and acting as the voice of the Latino community. Implementing a cross-training program promoted continued engagement of community members with academic partners. Proper infrastructure development is critical to building successful research partnerships in order to develop culturally-tailored interventions to improve survivorship care knowledge.

8.
J Cancer Educ ; 36(5): 971-980, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-32333369

RESUMEN

Latino adolescent and young adult (AYA) cancer survivors represent a growing population given the changing demographics in the USA. They experience significant healthcare disparities and barriers that warrant age-specific and culturally appropriate interventions to improve their clinical and psychosocial outcomes. This single-arm pilot study evaluated a novel intervention - a photonovela - on its ability to educate Latino AYA survivors and their family members and engage them in survivorship care. Ninety-seven participants (Latino AYA survivors and their family members) were recruited for this study. Three surveys assessing survivorship care confidence, cancer stigma, and survivorship care knowledge were administered to families before they received the photonovela, after the intervention, and at a booster phone call session. Mixed effects models were used to evaluate differences in scores at the three time points while accounting for repeated measures and family clustering. Results show that the photonovela was effective in improving survivorship care confidence and knowledge of Latino AYA survivors and their families. This pilot study indicates that the photonovela has potential to be a useful intervention for improving confidence and knowledge regarding the need to seek survivorship care for Latino AYA cancer survivors.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Adolescente , Hispánicos o Latinos , Humanos , Neoplasias/terapia , Proyectos Piloto , Sobrevivientes , Supervivencia , Adulto Joven
10.
J Pediatr Hematol Oncol ; 42(2): e114-e116, 2020 03.
Artículo en Inglés | MEDLINE | ID: mdl-30789458

RESUMEN

Idiopathic hyperammonemia is a rare, poorly understood, and often lethal condition that has been described in immunocompromised patients. This report describes an immunocompromised patient with acute myelogenous leukemia who developed persistent hyperammonemia up to 705 µmol/L (normal, 0 to 47 µmol/L) refractory to multiple different therapies. However, after beginning azithromycin and then doxycycline therapy for Ureaplasma species infection, the patient showed immediate and sustained clinical improvement and resolution of ammonia levels. Recognizing disseminated Ureaplasma species infection as a potential cause of idiopathic hyperammonemia, an unexplained, often fatal condition in immunocompromised patients, and empirically treating for this infection could potentially be lifesaving.


Asunto(s)
Protocolos de Quimioterapia Combinada Antineoplásica/efectos adversos , Hiperamonemia/etiología , Huésped Inmunocomprometido/efectos de los fármacos , Quimioterapia de Inducción/efectos adversos , Leucemia Mieloide Aguda/tratamiento farmacológico , Infecciones por Ureaplasma/complicaciones , Ureaplasma/efectos de los fármacos , Adolescente , Antibacterianos/uso terapéutico , Doxiciclina/uso terapéutico , Femenino , Humanos , Hiperamonemia/tratamiento farmacológico , Hiperamonemia/patología , Leucemia Mieloide Aguda/microbiología , Leucemia Mieloide Aguda/patología , Pronóstico , Infecciones por Ureaplasma/inducido químicamente , Infecciones por Ureaplasma/microbiología
11.
Cancer ; 126(3): 619-627, 2020 02 01.
Artículo en Inglés | MEDLINE | ID: mdl-31626337

RESUMEN

BACKGROUND: Optimal risk-based survivor health care includes surveillance for late effects and education targeted at reducing or preventing risky health behaviors. Understanding the reasons for a lack of risk-based follow-up care is essential. METHODS: Adult participants from the Childhood Cancer Survivor Study were surveyed about having a cancer-related visit in the past 2 years and the likelihood of having a cancer-related visit in the future. Additional factors thought to be related to the primary outcomes were also assessed. RESULTS: Nine hundred seventy-five survivors completed the survey. Twenty-seven percent (95% confidence interval [CI], 24%-30%) had a cancer-related medical visit in the previous 2 years, and 41% (95% CI, 38%-44%) planned to have such a visit within the next 2 years. The likelihood of having had a cancer-related visit within the last 2 years was higher among survivors assigning greater importance to these visits (relative risk [RR], 1.2; 95% CI, 1.1-1.3), perceiving greater susceptibility to health problems (RR, 1.2; 95% CI, 1.1-1.3), having a moderate to life-threatening chronic health problem related to their cancer (RR, 2.1; 95% CI, 1.7-2.7), seeing a primary care provider for a cancer-related problem (RR, 1.3; 95% CI, 1.0-1.6), having a cancer treatment summary (RR, 1.3; 95% CI, 1.0-1.6), and endorsing greater confidence in physicians' abilities to address questions and concerns (RR, 1.2; 95% CI, 1.0-1.3). CONCLUSIONS: Educational interventions improving awareness of treatment history and susceptibility to cancer-related late effects and corresponding risk-based care are likely to be beneficial for survivors of childhood cancers.


Asunto(s)
Supervivientes de Cáncer , Neoplasias/epidemiología , Evaluación de Resultado en la Atención de Salud , Adolescente , Adulto , Niño , Preescolar , Femenino , Humanos , Masculino , Neoplasias/patología , Riesgo , Encuestas y Cuestionarios , Adulto Joven
12.
Health Qual Life Outcomes ; 17(1): 162, 2019 Oct 29.
Artículo en Inglés | MEDLINE | ID: mdl-31665035

RESUMEN

BACKGROUND: When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL. METHODS: A cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient's sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics. RESULTS: Ninety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents. CONCLUSIONS: While proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.


Asunto(s)
Trasplante de Células Madre Hematopoyéticas/psicología , Calidad de Vida/psicología , Hermanos/psicología , Adolescente , Adulto , Niño , Preescolar , Estudios Transversales , Relaciones Familiares/psicología , Femenino , Humanos , Masculino , Trastornos Mentales/epidemiología , Persona de Mediana Edad , Padres/psicología , Encuestas y Cuestionarios
13.
Cancer ; 125(20): 3666-3677, 2019 10 15.
Artículo en Inglés | MEDLINE | ID: mdl-31291014

RESUMEN

BACKGROUND: Survivors of childhood cancer are at risk of neurocognitive impairment, emotional distress, and poor health-related quality of life (HRQOL); however, the effect of race/ethnicity is understudied. The objective of this study was to identify race/ethnicity-based disparities in neurocognitive, emotional, and HRQOL outcomes among survivors of childhood cancer. METHODS: Self-reported measures of neurocognitive function, emotional distress (the Brief Symptom Inventory-18), and HRQOL (the Medical Outcomes Study Short Form-36 health survey) were compared between minority (Hispanic, n = 821; non-Hispanic black [NHB], n = 600) and non-Hispanic white (NHW) (n = 12,287) survivors from the Childhood Cancer Survivor Study (median age, 30.9 years; range, 16.0-54.1 years). By using a sample of 3055 siblings, the magnitude of same-race/same-ethnicity survivor-sibling differences was compared between racial/ethnic groups, adjusting for demographic and treatment characteristics and current socioeconomic status (SES). RESULTS: No clear pattern of disparity in neurocognitive outcomes by race/ethnicity was observed. The magnitude of the survivor-sibling difference in the mean score for depression was greater in Hispanics than in NHWs (3.59 vs 1.09; P = .004). NHBs and Hispanics had greater survivor-sibling differences in HRQOL than NHWs for mental health (NHBs: -5.78 vs -0.69; P = .001; Hispanics: -3.87 vs -0.69; P = .03), and social function (NHBs: -7.11 vs -1.47; P < .001; Hispanics: -5.33 vs -1.47; P = .001). NHBs had greater survivor-sibling differences in physical subscale scores for HRQOL than NHWs. In general, the findings were not attenuated by current SES. CONCLUSIONS: Although no pattern of disparity in neurocognitive outcomes was observed, differences across many HRQOL outcomes among minorities compared with NHWs, not attenuated by current SES, were identified. This suggests that further research into environmental and sociocultural factors during and immediately after treatment is needed.


Asunto(s)
Supervivientes de Cáncer/psicología , Emociones , Neoplasias/epidemiología , Adolescente , Adulto , Negro o Afroamericano/psicología , Niño , Etnicidad/psicología , Femenino , Hispánicos o Latinos/psicología , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/patología , Neoplasias/psicología , Evaluación de Resultado en la Atención de Salud , Calidad de Vida/psicología , Población Blanca/psicología , Adulto Joven
14.
J Cancer Surviv ; 13(4): 580-592, 2019 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-31350681

RESUMEN

PURPOSE: Adolescent and young adult (AYA) cancer survivors experience unique barriers that compromise receipt of survivorship care; therefore, development of innovative educational interventions to improve rates of AYA survivorship care is needed. The efficacy of text-messaging and peer navigation interventions was compared to standard-of-care survivorship educational materials to increase AYAs' (1) late effects knowledge and (2) knowledge, attitudes, and self-efficacy towards seeking survivor-focused care. METHODS: This was a three-armed, prospective, randomized controlled trial with one control group and two intervention groups. The control group received current standard-of-care educational materials. One intervention group participated in a text-messaging program, and the second participated in a peer navigator program. Participants completed pre- and post-intervention questionnaires. Study outcome variables were quantified using Fisher exact tests, two-sample t tests, exact McNemar tests, conditional logistic regression models, and analysis of covariance. RESULTS: Seventy-one survivors completed the study (control n = 24; text-messaging n = 23; peer navigation n = 24). Late effects knowledge was high at baseline for all groups. The text-messaging group had increased survivorship care knowledge compared to the control group (p < 0.05); the peer navigation group had increased survivorship care self-efficacy compared to the control group; p < 0.05. Both intervention groups showed increased attitudes towards seeking survivor-focused care compared to the control group (text-messaging p < 0.05; peer navigation p < 0.05). CONCLUSIONS: Each intervention demonstrated significant benefits compared to the control group. IMPLICATIONS FOR CANCER SURVIVORS: Given the preliminary effectiveness of both interventions, each can potentially be used in the future by AYA cancer survivors to educate and empower them to obtain needed survivorship care.


Asunto(s)
Supervivientes de Cáncer , Aplicaciones Móviles/estadística & datos numéricos , Neoplasias/terapia , Cuidados Paliativos , Navegación de Pacientes/métodos , Grupo Paritario , Supervivencia , Adolescente , Adulto , Supervivientes de Cáncer/estadística & datos numéricos , Niño , Femenino , Humanos , Masculino , Neoplasias/epidemiología , Neoplasias/rehabilitación , Cuidados Paliativos/métodos , Cuidados Paliativos/estadística & datos numéricos , Aceptación de la Atención de Salud/estadística & datos numéricos , Navegación de Pacientes/organización & administración , Navegación de Pacientes/estadística & datos numéricos , Estudios Prospectivos , Sistemas de Apoyo Psicosocial , Encuestas y Cuestionarios , Telemedicina/estadística & datos numéricos , Envío de Mensajes de Texto , Adulto Joven
15.
Cancer ; 125(11): 1908-1917, 2019 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-30707763

RESUMEN

BACKGROUND: The impact of cancer and its treatment on employment and financial burden in adolescents/young adults (AYAs) is not fully known. METHODS: Eligibility for this cross-sectional study of AYA cancer survivors included the diagnosis of a malignancy between ages 18 and 39 years and survey completion within 1 to 5 years from diagnosis and ≥1 year after therapy completion. Participants were selected randomly from the tumor registries of 7 participating sites and completed an online patient-reported outcomes survey to assess employment and financial concerns. Treatment data were abstracted from medical records. Data were analyzed across diagnoses and by tumor site using logistic regression and Wald-based 95% confidence intervals adjusting for age (categorized), sex, insurance status, education (categorized), and treatment exposures. RESULTS: Participants included 872 survivors (breast cancer, n = 241; thyroid cancer, n = 126; leukemia/lymphoma, n = 163; other malignancies, n = 342). Exposure to chemotherapy in breast cancer survivors was associated with an increase in self-reported mental impairment in work tasks (odds ratio [OR], 2.66) and taking unpaid time off (OR, 2.62); survivors of "other" malignancies reported an increase in mental impairment of work tasks (OR, 3.67) and borrowing >$10,000 (OR, 3.43). Radiation exposure was associated with an increase of mental impairment in work tasks (OR, 2.05) in breast cancer survivors, taking extended paid time off work in thyroid cancer survivors (OR, 5.05), and physical impairment in work tasks in survivors of "other" malignancies (OR, 3.11). Finally, in survivors of "other" malignancies, having undergone surgery was associated with an increase in physical (OR, 3.11) and mental impairment (OR, 2.31) of work tasks. CONCLUSIONS: Cancer treatment has a significant impact on AYA survivors' physical and mental work capacity and time off from work.


Asunto(s)
Supervivientes de Cáncer/psicología , Neoplasias/economía , Neoplasias/terapia , Desempleo/estadística & datos numéricos , Adolescente , Adulto , Costo de Enfermedad , Estudios Transversales , Femenino , Financiación Personal , Humanos , Modelos Logísticos , Masculino , Medición de Resultados Informados por el Paciente , Adulto Joven
16.
Workplace Health Saf ; 67(4): 179-188, 2019 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-30608021

RESUMEN

Work provides satisfaction and stability to young adult cancer survivors. However, progressive health changes because of cancer may compromise safety and diminish functional ability. The purpose of this study was to describe long-term young adult cancer survivors' work experiences and describe their interactions with occupational and environmental health professionals (OEHPs) within the workplace. Cancer survivors were recruited from the Los Angeles County Cancer Surveillance Program. Professional organizations provided access to OEHPs. Constructivist grounded theory guided individual semi-structured interviews during data collection and analysis. Processes of interaction between cancer survivors and OEHPs found to influence work included revealing the survivor-self, sustaining work ability, gatekeeping (employment opportunities, return to work), and accessing support. OEHPs appeared to facilitate survivors' work ability in the long term if services were available, services were known to survivors, and survivors revealed needs. Educating workers about OEHP services throughout cancer experiences and survivorship could ultimately improve interactivity and provide supportive work environments.


Asunto(s)
Supervivientes de Cáncer/psicología , Salud Ambiental , Relaciones Interprofesionales , Salud Laboral , Lugar de Trabajo/psicología , Adolescente , Adulto , Supervivientes de Cáncer/estadística & datos numéricos , Femenino , Humanos , Masculino , Investigación Cualitativa , Adulto Joven
17.
J Cancer Surviv ; 12(5): 651-658, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-29938339

RESUMEN

PURPOSE: There is a paucity of formal clinician education concerning cancer survivorship care, which produces care barriers and poorer outcomes for survivors of childhood cancer. To address this, we implemented a curriculum in childhood cancer survivorship care for pediatric residents at the University of California, Los Angeles (UCLA). We examined the efficacy of this curriculum following program completion. METHODS: A case-based curriculum was created and integrated within existing educational structures using Kern's model. We utilized the retrospective pre-posttest method to evaluate participating residents' knowledge, clinical skills, and attitudes towards cancer survivorship topics before and after receiving the curriculum. Pre-posttest items were compared using paired t tests and one-sided binomial tests. We analyzed free-response question items for major themes using constant comparative methods. RESULTS: Thirty-four residents completed the curriculum and its evaluation. Each assessment item significantly increased from pre- to post-curriculum; p < 0.05. Greater than 40% of residents improved in all but one assessment item post-curriculum; p < 0.05. Residents reported the curriculum enhanced their pediatric knowledge base (M = 3.24; SD = 0.65) and would recommend it to other residency programs; M = 3.24; SD = 0.69. Major themes included residents' request for additional oncofertility information, training in counseling survivors, and cancer survivorship training opportunities. CONCLUSIONS: A cancer survivorship curriculum can successfully increase trainees' knowledge, clinical skills, and comfort in discussing topics relevant to survivorship care. IMPLICATIONS FOR CANCER SURVIVORS: With increasing numbers of childhood cancer survivors living into adulthood, residents will likely treat this population regardless of intended career path. This curriculum represents one method to deliver formal cancer survivorship training.


Asunto(s)
Curriculum/normas , Internado y Residencia/normas , Neoplasias/mortalidad , Pediatría/educación , Supervivencia , Femenino , Humanos , Masculino , Neoplasias/terapia , Estudios Retrospectivos
18.
J Clin Oncol ; 35(34): 3830-3836, 2017 Dec 01.
Artículo en Inglés | MEDLINE | ID: mdl-28976795

RESUMEN

Purpose To estimate the prevalence of sperm banking among adolescent males newly diagnosed with cancer and to identify factors associated with banking outcomes. Patients and Methods A prospective, single-group, observational study design was used to test the contribution of sociodemographic, medical, psychological/health belief, communication, and developmental factors to fertility preservation outcomes. At-risk adolescent males (N = 146; age 13.00 to 21.99 years; Tanner stage ≥ 3), their parents, and medical providers from eight leading pediatric oncology centers across the United States and Canada completed self-report questionnaires within 1 week of treatment initiation. Multivariable logistic regression was used to calculate odds ratios (ORs) and 95% CIs for specified banking outcomes (collection attempt v no attempt and successful completion of banking v no banking). Results Among adolescents (mean age, 16.49 years; standard deviation, 2.02 years), 53.4% (78 of 146) made a collection attempt, with 43.8% (64 of 146) successfully banking sperm (82.1% of attempters). The overall attempt model revealed adolescent consultation with a fertility specialist (OR, 29.96; 95% CI, 2.48 to 361.41; P = .007), parent recommendation to bank (OR, 12.30; 95% CI, 2.01 to 75.94; P = .007), and higher Tanner stage (OR, 5.42; 95% CI, 1.75 to 16.78; P = .003) were associated with an increased likelihood of a collection attempt. Adolescent history of masturbation (OR, 5.99; 95% CI, 1.25 to 28.50; P = .025), banking self-efficacy (OR, 1.23; 95% CI, 1.05 to 1.45; P = .012), and parent (OR, 4.62; 95% CI, 1.46 to 14.73; P = .010) or medical team (OR, 4.26; 95% CI, 1.45 to 12.43; P = .008) recommendation to bank were associated with increased likelihood of sperm banking completion. Conclusion Although findings suggest that banking is underutilized, modifiable adolescent, parent, and provider factors associated with banking outcomes were identified and should be targeted in future intervention efforts.


Asunto(s)
Actitud Frente a la Salud , Preservación de la Fertilidad/estadística & datos numéricos , Comunicación Interdisciplinaria , Neoplasias/epidemiología , Preservación de Semen/estadística & datos numéricos , Bancos de Esperma/organización & administración , Adolescente , Teorema de Bayes , Canadá , Estudios de Cohortes , Preservación de la Fertilidad/métodos , Personal de Salud/estadística & datos numéricos , Humanos , Modelos Logísticos , Masculino , Cadenas de Markov , Método de Montecarlo , Neoplasias/patología , Neoplasias/terapia , Padres/psicología , Valor Predictivo de las Pruebas , Estudios Prospectivos , Medición de Riesgo , Preservación de Semen/métodos , Factores Socioeconómicos , Sobrevivientes , Estados Unidos , Adulto Joven
19.
Pediatr Blood Cancer ; 64(7)2017 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-28371314

RESUMEN

This is a case presentation describing a high insulin requirement that suddenly resolved in a patient with acute lymphoblastic leukemia treated with stem cell transplantation complicated by chronic graft-versus-host disease. The patient was diagnosed with acquired partial lipodystrophy that did not require alternative therapies such as leptin or insulin-like growth factor 1.


Asunto(s)
Enfermedad Injerto contra Huésped/complicaciones , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Lipodistrofia/etiología , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Niño , Enfermedad Crónica , Femenino , Humanos , Hipertrigliceridemia/etiología , Hipoglucemiantes/uso terapéutico , Insulina/uso terapéutico , Lipodistrofia/tratamiento farmacológico
20.
J Cancer Surviv ; 11(4): 505-516, 2017 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-28364263

RESUMEN

PURPOSE: This study aimed to develop and examine the acceptability, feasibility, and usability of a text messaging, or Short Message Service (SMS), system for improving the receipt of survivorship care for adolescent and young adult (AYA) survivors of childhood cancer. METHODS: Researchers developed and refined the text messaging system based on qualitative data from AYA survivors in an iterative three-stage process. In stage 1, a focus group (n = 4) addressed acceptability; in stage 2, key informant interviews (n = 10) following a 6-week trial addressed feasibility; and in stage 3, key informant interviews (n = 23) following a 6-week trial addressed usability. Qualitative data were analyzed using a constant comparative analytic approach exploring in-depth themes. RESULTS: The final system includes programmed reminders to schedule and attend late effect screening appointments, tailored suggestions for community resources for cancer survivors, and messages prompting participant feedback regarding the appointments and resources. Participants found the text messaging system an acceptable form of communication, the screening reminders and feedback prompts feasible for improving the receipt of survivorship care, and the tailored suggestions for community resources usable for connecting survivors to relevant services. Participants suggested supplementing survivorship care visits and forming AYA survivor social networks as future implementations for the text messaging system. CONCLUSIONS: The text messaging system may assist AYA survivors by coordinating late effect screening appointments, facilitating a partnership with the survivorship care team, and connecting survivors with relevant community resources. IMPLICATIONS FOR CANCER SURVIVORS: The text messaging system has the potential to improve the receipt of survivorship care.


Asunto(s)
Neoplasias/terapia , Sobrevivientes/psicología , Envío de Mensajes de Texto/estadística & datos numéricos , Adolescente , Adulto , Niño , Humanos , Masculino , Neoplasias/mortalidad , Tasa de Supervivencia , Adulto Joven
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